I don't know why I am in such shock about this, but the trial we participated in ended right before Christmas...way early.
Every 6 months, the NIH (or something like that) comes in to review the data of the study to see if there is a clear answer as to if the pre-natal or post-natal surgery is better. It seems that they decided the benefit vs risk of the pre-natal surgery is worth it. When I first heard this on Friday (as rumor) I was really taken aback...kind of upset actually that we were told just 6 weeks ago that there was no clear benefit to those kids that received the pre-natal surgery vs those that didn't...and then BAM! the trial ends early (they only got to 183 of the 200 particpants) and they are done.
We will still be going back for the 12 and 30 month evaluations, but no new folks will be allowed to participate. Another weird thing is that people can now CHOOSE the pre-natal...we didn't have that option. Brian says I'm crazy to be bugged by this, but I will probably always wonder. God has watched out for us through this entire process and that's all I really need to know.
I spoke to the study coordinator today about all of this and she said they are going to be sending out a letter to all the 183 families to inform them of this once the data is ready to be published. It has to be "out" before they really make it public, so for now, it's just word of mouth that it's over. I hope that "they" will now take some of the money and put it towards reseach for those kids that are already here...wouldn't that be awesome.
CeCe has her Early Intervention evaluation tomorrow and her repeat audiology testing (she failed right before we left Philly) on Wednesday. I guess that's it for now....
By the way...Happy New Year!